Am I Glowing Yet?

No, I am not glowing, but I am decorated with beautiful purple magic marker art all across the right side of my chest from my clavicle down to my ribs and under my arm. (How did they know purple was my favorite color?) I have solid lines, polka dots, and dotted lines. While I was getting dressed at home one day, Clay walked in and saw the canvas that my chest has become. His eyes got wide, and he said, “Mom, has Lance been drawing all over you?!” No, but it sure does look like it. As a result, I have been limited to wearing turtlenecks these past few weeks. Thank goodness it is winter. In the summer I guess you just have to go around looking like your three year old went to town with the magic markers.

And, while I am not glowing, after two weeks of being zapped almost daily, the radiated area has started looking sunburned, and it feels kind of sensitive. I have also developed a rash below my collar bone that is quite itchy at times. I was told initially to use only vitamin e cream, and the radiation techs also gave me some aloe vera gel to help alleviate the irritation. If this is as bad as it gets, I can’t complain. I see a doctor once a week, and during my last visit, the doctor told me that my skin looks better at this point than it does on most patients. I always find this type of information encouraging. I guess it’s nice to be “above average” even in radiation treatments. .

When I first began the radiation treatments, they gave me a pale blue card with a bar code and my picture on the outside. On the inside is a grid with lots of boxes. This card has three purposes. When I first get to the office, I wave it in front of a scanner at the reception desk, and it lets the techs in the back know I have arrived. (I guess my strong, bubbly personality isn’t enough to announce my presence, so this technology is necessary.)

Second, the picture ensures that I don’t send an imposter in my place to take my treatments for me. Seriously! Like I could even find people to voluntarily submit their bodies for intense beams of radiation in my stead. (Like I would even want to.) It actually is to prevent medical fraud, and while I don’t understand how you would go about stealing someone else’s medical i.d. to receive medical care, with the cost of medical treatment these days, I definitely understand the motivation!

The third reason is record my progress. Every day, a radiation tech documents the date and initials a box. It actually looks like one of those cards that restaurants give you. Buy five sandwiches, get a sixth free. I asked Noel if the 28th treatment was complimentary, and he said that I get a toaster. I guess that’s quite appropriate since they are literally toasting me every day.

There are usually two techs (most often Noel, Becky, or Liz) in the room with me each day, checking measurements, positioning me on the platform, aligning the machine, playing connect the dots with the magic markers, measuring me some more and then departing the room to push the button on the toaster. They have to come back two additional times to reconfigure the machine as three different fields are radiated each day, beginning with my clavicle. (During that initial appointment from hell that now seems like forever ago, the doctor explained to me that breast cancer advances in a very predictable pattern. It first spreads to the axillary lymph nodes under the arm and then on up to the lymph nodes near the clavicle, so radiating this area will destroy any cancer cells that may have spread and that may have survived the chemo.) Next they do the area under my arm where my axillary lymph nodes once were and also my chest wall. Every other day, they cover me with someone called a bolus that acts like a layer of skin. It causes the radiation to affect the surface of my skin, rather than penetrating more deeply as it does on non-bolus days. The techs work quickly and efficiently, and I am usually in and out of the radiation center in about 25 minutes. I enjoy talking with them, but I keep it brief as I don’t want to distract them and end up having the wrong body parts subjected to the radiation.

Occasionally, there is a student from MCV, Christina, who is also in the room with us. (I feel like my chest has gotten more exposure this past year than a Playboy centerfold!) Noel was explaining to Christina one day how these lines converge here while these angles diverge from these points. Then he would throw in some numbers every now and then for effect. I said to Christine, “I sure hope that you understood what he said because it was totally Greek to me.” The technology is pretty sophisticated, but then they will pull out a little plastic white ruler to double check the converging divergences. I do feel like I am totally at their mercy because it is not like I can check behind them to make sure they are radiating the right spots. (Torture for a control freak!) Not to mention, math was my worst subject, and there is a lot of trigonometry (or is it geometry?) going on. I guess they are pretty accurate – the proof is the huge red radiated rectangle on my upper body.

As you can see, the radiation experience has improved significantly since that visit back in December. My sense of humor is restored. Just as important, it no longer hurts to stretch my arm back behind me while I am on the radiation platform. (Erica, my physical therapist friend was amazed at the progress I made following that simulation appointment. Yea, that’s what 45 minutes of torture will do for range of motion.) Also, the radiation room feels like the tropics compared to the simulation room. When I was originally told I would need 28 treatments, I thought it sounded like an eternity. Since I go every week day, those boxes are filling up fast, and that toaster is almost mine. Today was treatment #19, and yes, I am counting!

As I close, I would like to ask all of you to keep many people in your prayers at this time:

My Auntie Shirley died yesterday at the age of 72 following a three year battle with ovarian cancer. I understand she was courageous throughout the whole experience and gave strength to those around her.

I also lost a great aunt yesterday as well. Aunt Betty was 95 years old and lived a long and remarkable life.

Today, Bo and I found out that an acquaintance of ours was just diagnosed with Stage 4 lung cancer that is also in her bones and liver. She is only 37 years old.

Finally, my almost sister-in-law and great friend, MaryAnne, learned recently that her mother's breast cancer had returned. In speaking with my Dad today, I understand that MaryAnne's mother is hospitalized and is not doing well.

Thanks for keeping all of them and their families in your prayers.

A Tale of Radiation - Part III

So there I sat in the parking lot in front of the radiation center unable to hold back the tears that had been building not just for the last hour and a half, but probably for the past seven months. It wasn't one of those "why me?" or "poor me" moments. Rather it was a "this really sucks!" kind of breakdown, and it lasted about 15 minutes. Bo listened patiently and sympathetically as I explained what happened, words interupted with tears about every other sentence. Finally, I finished my story, managed to locate my temporarily misplaced composure, and declared myself fit to hit the road and resume my Christmas preparations. Nonetheless, the rest of the day, I was pretty much a basket case, and the slightest anything would summon more tears.

Why the waterworks? Well, I have my theories, but before I get to those, the most basic reason was that IT HURT LIKE #@$!%!!! I was sore the rest of the day. Pure physical pain aside, the rest is theory: The surgery had created a kind of euphoric condition since I was instantly and finally free of the dreaded cancer. I also had had a nice break from any form of medical intervention since the surgery (not that I was ever able to stray far from reality with my companion of six weeks, the drainage appendage). The events that unfolded in the radiation center were a painful reminder that the journey wasn't over yet. Additionally, I really had expected only a brief consultation with the doctor before being sent on my way to enjoy the holidays, so I wasn't psychologically prepared for the "sim". Then there were all the assurances that radiation would be a breeze compared to everything else. Who would have ever suspected that this would end up being the worst appointment since treatment began back in June? Certainly not me.

I am sure the doctor didn't know I was perceiving her as insensitive. I don't believe doctors understand the power they hold over their patients. The doctor/patient relationship by its very nature is out of balance from the get go as you are to a great degree at the mercy of these professionals who have the knowledge and who control the medical treatment plans. Besides, knowing you have a very serious illness tends to make you feel more vulnerable and also puts you in a weakened psychological and emotional state. Then, if you are able to overcome all that, the actual circumstances of the appointments can perpetuate the imbalance of personal power. I actually felt weak and diminished as I lay on the plank half naked while even this very petite doctor towered above me. Not to mention, it is virtually impossible to feel self-assured and project any amount of confidence when everyone else in the room is fully dressed and you're not!

Her adamance that I get my arm into position regardless of the obvious physical pain didn't help things. Even though she didn't ever say these words, what she did say (and didn't say) and her actions made me feel like we had already lost valuable time and that the consequences would be dire if we didn't get the treatment going immediately. I couldn't help it that my body had separation anxiety from the lymphatic fluid, and if time was of the essence, why was the appointment with her scheduled a full week after the drain was removed? My imagination starting getting the best of me. "Is she worried because I had two lymph nodes test positive and she's afraid that the cancer has spread?" I was especially concerned because this was the same doctor whom the plastic surgeon had consulted several months ago when I was considering implants, and at that time, she said it would be okay to delay radiation for a couple months while the expanders stretched my skin. Had something changed in my prognosis that I didn't know about?

In addition to the pain and the mind games and the vulnerability and the over-sensitivity, etc., I guess I just needed to have a good cry. It had been awhile, the pressure had probably reached a point where it needed to be released, and the whole experience in the radiation center was enough to blow off the top.

I had two more conversations with Noel that day. He called back to let me know he had spoken to the doctor and they had found a way to get the necessary calculations completed by next Wednesday. Consequently, I would need to come back for the remainder of the "sim" on Wednesday, and radiation would begin next Thursday, not the following week as we had originally discussed. (Typical conversation with myself ensues: "See? My condition is dire, afterall!" and "No, it's not, they are just anxious to complete your treatment. Relax.")

I asked about treatment times again, and Noel reitereated that he only had middle of the day appointments available, but that other times may open up as we progressed through the treatments. I wasn't very nice. For the first time since I was diagnosed, my frustration got the best of me. I said, "Well, unfortunately, I don't have the luxury of being retired. I have to work, and the middle of the day just isn't very convenient for me." Noel explained to me very calmly and patiently that most of the patients do work and that is why the early morning and late afternoon slots fill up. Not to be deterred from my momentary descent into ugliness, I said, "Well, whenever I am at your office, I only see old people." (Ouch. I regretted it almost as soon as I uttered it.) He agreed that most of their patients were older but many were still working. He also explained that some of the morning slots were taken up by patients who had radiation first followed by long chemo treatments next door at Dr. P's office. With that sobering piece of information, I relented. My dominant personality, the nice one, finally returned. He gave me several time slots, and we agreed that 2:45 p.m. would be my treatment time.

But is wasn't over. I thought about it and then called him back to see if we could do 2:30 p.m. In addition to working, I explained to him, I have three young children and also need to work around their school schedules. I apologized for being difficult. I know he was probably thinking, "This is her life we are talking about, and she's getting all particular about the time of day." That thought served to remind me that I shouldn't get hung up on inconsequential things, but it also became apparent to me by my behavior that day that maybe I was just starting to get worn down by it all...

I decided to get on the treadmill when I got home. That always makes me feel better, right? And it did until a particular song came on my IPOD, and then there I was sobbing on the treadmill. (Remember Rick Astley from the 80's? Cry for Help is an awesome song but can be quite emotional depending on one's state of mind.) Luckily, the sound of the treadmill covered up the sound of my boo hooing, so the boys and Bo were oblivious to it all.

That was the day my brother, John, and his gang arrived, so when we finally got all five boys in bed, and John and I had a chance to sit down and talk, I filled him in on the day's events. He told me that it was okay to cry. He said that I didn't have to be strong for everybody else and that I didn't have to be positive all of the time. It reminded me of something my friend, Betty, said when I was first diagnosed. She told me that I didn't have to be the perfect cancer patient. (She obviously knows me and my pursuit of perfection well.)

It isn't so much that I am trying to uphold an image or that I am trying to be the perfect cancer patient or that I am trying to be strong for the people around me. In fact, I have learned to let go of a lot of things, and I continue to work on this. (Obvious by the state of my house - total disarray!) I have also learned that I can't do it all by myself, that it is okay to receive help from others, and that people actually want to help. This doesn't make me weak; it makes me human. I know all that at one level, but old thought patterns are hard to break, and I am a work in progress. So in spite of all of this newfound, very rational information lurking in my brain, I still can't help how I feel. The main reason I don't want to cry or be sad in front of other people is that I don't want to make anyone else sad. As John and I were having this conversation, his eyes were welling up with tears for me, and this made me cry more. I just don't want to cause anyone else pain. (The other reason I avoid public displays of teariness, and it is a very strong second - I just don't like how I look or sound when I cry!)

But all that being said, the truth of the matter is that 99% of the time, I am not sad. I don't think I am putting on a front for others or for myself. I honestly would rather be laughing and smiling than crying. I would rather celebrate what I have than mourn what I have lost. When I start to feel sad about losing my breasts, I guess I could follow that path and see where it goes, but I think it would lead to sorrow. And that is perfectly okay. The healing process probably does require some time for grieving and the amount probably varies by individual. It's just that when I do start to feel a little sad, like when I see my scars and miss my breasts, my natural reaction is to automatically turn my thinking to how much I love my life, and how blessed I am. It is almost effortless, and for that I am grateful. I will continue to wake each morning with gratitude for a new day, but I'll try not to hide the tears when they need to flow either.

I'm off to radiation. Treatment #12 already. It took me so long to write about the initial experience day that I have since breezed through (really!) the first two weeks.

A Tale of Radiation - Part II

Sim? What is a sim? I soon found out. Noel, lead me back to a room behind a door with the big radiation warning symbol. The door should should have also had a sign advising unsuspecting souls of a severe climate change. The room was kept at frigid, sub-arctic temperatures. Noel explained that the room was kept at a low temperature to protect the medical equipment (never mind the poor ailing patients!) I had to undress from the waist up and lie down on a hard platform. Noel put a blanket over my lower body and was able to partially cover the left side of my upper body, but I was so cold my teeth were chattering and I was literally shaking.

The purpose of this suffering was to perform a "sim"ulation of the radiation and to obtain some films using a CAT screen. Noel asked me to put my right arm above and behind me. I couldn't do it - my arm just wasn't ready to comply with this request. Noel expressed the importance of getting my arm out of the field of radiation, and I certainly understood this, but try telling my arm that. I asked him if he encountered unreasonable arms frequently, and he said it really wasn't very common. Then it dawned on me. Of course he doesn't run into reluctant arms very often. Most breast cancer patients have surgery, then months of chemo, and then radiation. Consequently most breast cancer patients have at least six or seven months to recover range of motion in their arms. I had only had seven weeks. This insight didn't help matters, but it made me feel better about my inability to comply with the seemingly reasonable request.

Noel seemed stumped so he retrieved the doctor. She stood above me and told me that I just had to get my arm to go back. She squinted at me and twisted her mouth and repeated questions I had just answered not 30 minutes earlier, "Now when was your last chemotherapy session again?" I meekly responded, "October 4." "And when was your surgery?" she continued. "November 1" I replied as if this was something to be ashamed of. "Well, we really can't wait any longer. You need to get your arm back." I told her that I, too, wanted to get the radiation started but that I could only force my arm back so far.

She stayed in the room and tried to help Noel situate me in such a way that my arm wasn't in the field of radiation. I gritted my chattering teeth and pushed my body to the limits of my pain threshold. (I told myself that if I could have three babies without a single epidural, I could endure this, but at least when I was in childbirth, I was rewarded each time with a beautiful baby boy. I actually tried to employ some of the pain management techniques I learned in Lamaze class.) I finally got my arm out of the "hot" zone. The doctor departed, and Noel sympathetically told me that he would go as quickly as he could.

I was probably in the North Pole about 45 minutes, and for that entire time, my arm was screaming out for mercy. I was rearranged a couple of times, decorated with magic markers, tatooed with two tiny dots of black ink, mechanically propelled in and out of the CAT screen machine, photographed, and constantly reassured that it wouldn't be much longer. Finally, I heard the best news I had heard in a really long time when Noel informed me, "You can put your arm down and get dressed."

Back in a temperate climate, Noel and I discussed next steps. I was to come back next Thursday to complete the sim. At that time, they would continue to take more measurements and would give me a third tatoo. Since they didn't want to do radiation for just one day before the long New Year's weekend, they would begin the actual radiation treatments the following week. Okay, now I am not the brightest person in the world, but wasn't the doctor just making it sound like I was knocking on death's door if we didn't get radiation started immediately? I posed the question a little differently to Noel. "The doctor seemed to have a strong sense of urgency about getting the radiation treatments started as quickly as possible. Why the delay?" I asked. Noel explained that some calculations had to be completed before I could come in for the next step and that due to the holidays, the necessary information wouldn't be available until next Thursday. We also talked about available appointment times for my radiation treatments, and I told him that none of them were very desirable as they were in the middle of the day and would interfere with my work. He said that as other patients completed their radiation treatments, different appointment times would open up. We confirmed my appointment time and wished eachother a Merry Christmas

So almost two hours after I had entered the office for what I thought would be a simple appointment, I made it back out to my car. I called Bo, and the second I heard his voice, I lost it. I broke down into tears. These weren't gentle, delicate tears, daintily trailing down your face tears. This was an all out red and swollen-eyed sob fest right out there in the parking lot.

To be continued...

Lighting Up the New Year - A Tale of Radiation - Part 1

I went to yoga tonight for the first time in nearly three months. It truly rejuvenated mind, body, and spirit. I didn’t realize how much I needed it until the hour and a half was over, but I walked out feeling much better physically and emotionally than when I walked in. My whole body has been out of whack since the surgery and I have all kinds of residual aches and pains as a result, even in parts of my body that weren't directly affected by the surgery. After yoga I felt less constricted and bound up. I am confident that my body will fully recover its physical capabilities because I want it to, expect it to, and will do whatever I must to ensure that it does. I continue to go to physical therapy twice a week, but the yoga seemed to help in ways that even physical therapy hasn't, so I will definitely put yoga back into my weekly routine.

At one point, as I was face down on the mat, I couldn't help but remember the last time I was in that position on my yoga mat, I was lying on my own breasts. (Tonight I was lying on my prostheses, and despite the latest and greatest technology, silicone is just not as comfortable as real live flesh. Next time I think I will leave my breasts at home.) The thought made me a little sad, but I didn’t dwell on it for long. Yoga isn’t about the past (or the future); rather, it is about turning inward and being in the moment, so that is what I did.

I have been so tired this past week. I haven’t even felt like writing in my blog. Even though my holidays were stress-free, I think they were exhausting, nonetheless. Also, I am sure I was not the only one who wasn’t really looking forward to this past Tuesday morning and going back to work. As much as I endeavor to use my new awareness of the preciousness of life to celebrate each and every day, the reality is that I still have days here and there when I really don’t want to get out of bed! I am still a work in progress but I think the solution to this apathy is to find ways of creating more meaning to my life. My new awareness has made me question my current occupation, but until the universe reveals the appropriate alternative, I will continue. Who ever know cancer could cause so many repercussions?

Anyway, I guess yoga combats both fatigue and apathy because after tonight's practice, I was anxious to come home and resume my blog updates… so let me bring you up to speed on my radiation experience…

Everyone has told me what a breeze radiation is compared to everything else one endures during treatment, so the Thursday before Christmas I went in for what I thought was a simple in and out consultation with the radiologist. I thought she would review the information she had discussed with me back in the summer and then we would schedule my sessions. Well, I should have gotten a clue when even my arrival didn't go very smoothly...

My appointment was at 11:00 a.m., but they asked me to get there early. I arrived at 10:50 a.m. (which is very early for me, a long-time sufferer of chronic lateness syndrome). There was no one at the reception desk, so I signed in on the clipboard and sat down in the corner to read magazines. It was probably about 20 minutes later when my cell phone rang. It was Bo, and he said the doctor's office was wondering where I was. Where I was? I was exactly where I was supposed to be - in their lobby, darn it!! I went up to the receptionist and told her that I was there. She probably had figured it out when she heard my half of the conversation on the phone, but she didn't seem very amused by this little mix up and proceeded to hand me a bunch of papework to complete. I reminded her (nicely, of course) that I was the same Mary Beth Gibson with breast cancer that had been seen earlier in the year and had already completed all of the necessary forms. She then informed me very dryly that she would let them know I was there.

Well, the first half hour went pretty much as I expected. The doctor explained that the intent of the radiation is to cause the skin to have a sunburn-like reaction. She said that the new machines work better on internal tissue, but since I had a mastectomy, I have no tissue left between the skin and the chest wall. They have found that they achieve better results in mastectomy patients by burning the skin. When she discussed the side effects with me, she underlined the part about “irritation of the skin with rare blistering or bleeding.” Other side effects include possible scarring of the lung underlying the chest wall, temporary fatigue, and lowering of blood counts. I was instructed to purchase vitamin e cream and to put absolutely nothing on the right chest wall area except for this cream -no deodorent, no lotion, no soap, no perfume, nothing.

I was asked to sign a consent form acknowledging that the doctor had explained everything to me. I read the form before signing it, and I noticed it said that the alternatives had been discussed with me. Alternatives? What alternatives? So when the doctor returned to the room, I asked her what my alternatives were. “You have none,” she said. Oh, okay. Then she added that some other forms of cancer do offer a couple of treatment options. I also asked her about the long term side effects, and she said that there really aren’t any. I do know, however, that the radiated tissue changes in texture and composition permanently, and that is why I can't have reconstruction with implants following radiation treatment. I also know that a family friend who had radiation following a mastectomy years ago has lingering lung irritation that still manifests itself in a wicked cough when she gets sick. All that being said, it’s not like I have any alternatives except to decline radiation, and I continue to welcome any treatment that will increase my odds of never having to do battle with this disease again.

We came to what I erroneously thought was the end of my appointment.

Naïve thought bubble: Okay, well thanks for all of the information, Doctor. My brother and his entourage are arriving shortly, and I have to run some errands, pick up some last minute gifts, grocery shop, go home, do a little bit of work, and cook vegetarian chili. So I guess we can start next week. Merry Christmas.

Thought bubble interruption:

Doctor to the tech, Noel, “Is she scheduled for a sim?”

Noel to the doctor, “No.”

Doctor to Noel, “Well go ahead and do her today.”

To be continued….